Tips for Families with Special Needs on Enjoying Disney World

Disney World is a place of magic and wonder. Sure, it’s also incredibly expensive and crowded and hot… but those things just don’t seem to matter when you are standing in front of the castle at Magic Kingdom!

There is something so incredible about being at Disney World and the feeling of expectation and fun and hope. I don’t know if everyone feels it, but as a family that has lived in the world of doctor visits, special diets and treatments, diagnostic tests and rare diseases for the last 18 years, Disney World gives us a chance to live and love and laugh “just like everyone else.”

No, the problems that we face everyday don’t vanish on Disney time. But the problems just don’t seem so big or so hard. Instead of researching unknowns and sitting for hours in doctor’s offices, we research which restaurant to eat at and how to get the most out of “magic hours.”

So here are a few tips for families with special challenges from a seasoned Disney family! Truly… we just returned from Disney for the 5th time in 6 years.

  1. Plan early!

    We typically use a travel agent (Cowboy Way Travel) because they know us and know our needs. But Disney online and over the phone work great as well. I’ve just found that for our needs (two connecting rooms with ground floor access and a scooter), the travel agent can take care of everything and it works. And since we use a travel agent, we also purchase trip insurance. EVERY. TIME. It’s worth the cost.

    Also, by planning early you can make the best use of the early reservations for meals and fast passes. We are talking making plans 180 days out for dining and 60 for rides/attractions!! I know the needs of my family and waiting till the last minute to plan a trip means that you miss out on the best times for rides and meals.

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  2. It’s not an adjoining room.. it’s a CONNECTING room!

    Even as seasoned veterans, when we got to our rooms we found that we had rooms next door to each other, but not connecting! Uh Oh. This doesn’t work with an 8 year old! Disney defines adjoining as touching and adjacent as near by.. if you need the rooms to be able to open inside to each other, you need a CONNECTING room. Our rooms situation was easily remedied, but it’s an important distinction to keep in mind as at peak times you might not get a connecting room if you asked for an adjoining room!

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    Rooms at Riverside
  3. Speak up!!

    When you run into an issue, SPEAK UP! Give Disney a chance to fix the problem.
    One night when we ended up in a monsoon and the bus driver was horrible, we spoke up. Why? Because Disney cares and they work too hard for a bad experience to color the rest of the trip. Taking the time to talk calmly with the concierge allowed us to express our frustration and gave Disney the chance to make it a positive.

  4. If you need the disability access, USE IT!

    But, remember to take ALL of your family’s magic bands with you when you set up access at guest services. You only have to do this once each trip as the disability information is in the magic band. Also, once it is set up, any member of the party can “badge in” and request disability access to a ride/attraction. The key here is to manage your disability access as you can only have one outstanding at a time! The gift of disability access is that you don’t stand in line. It doesn’t make the wait go away, so plan accordingly! We know that we can’t wait in the heat/sun, so we go to shows while we wait for the next attraction.

    And if you haven’t seen Festival of the Lion King, it is WORTH IT!

  5. Plan down time.

    One of the hardest things for me to do is “waste” daylight at Disney, but I’ve learned that in order for Maddie to function for the duration of a trip, she has to have down time. So while the big girls napped, Kylie lived it up at the pool and the playground. Port Orleans Resort has great pools and a fantastic playground. Side note: besides being more spread out, Port Orleans is great for families as the rooms are larger, the place quieter and the amenities spot on.
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  6. Expect to wait for a bus.

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    Hands down, the most UNmagical thing about Disney is waiting for the bus to transport you from park to park or park to resort. If you are in a wheelchair or scooter, the wait can be a while as they only take one or two chairs on each bus. Sometimes these waits are in the rain and sometimes these waits can be an hour (or longer!). Plan for at least a 40 minute wait and then be pleasantly surprised every time you arrive at your hub and find a bus on its way in!

  7. Take your own ponchos and an extra pair of shoes!

    In case you didn’t know.. it rains in Florida. Plan on getting rained on.

    The ponchos at Disney are expensive and tear super easily. We purchase our own ponchos that are heavier plastic and bring them with us! Also, since Maddie uses a scooter, she gets a larger poncho that will fit over the scooter so that she can drive it and stay dryish.
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    Bring an extra pair of shoes.. or be like me and spend an hour sitting in the laundry room holding the door to the dryer closed with your back!
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  8. Find the accessible areas for watching the parades.

    Parades are really cool to watch. Unless you are in a scooter/wheelchair.  Find the accessible areas for watching the parades and take a seat on the curb. It was so fun to watch the girls watch the parade. We are big fans of the Fantasy Parade as it is at 3pm in the afternoon at Magic Kingdom and we can see that one. It just doesn’t matter how late of a start we get, we can’t make it to a firework or evening show as a family. When the sun goes down, my family fades fast.

  9. Ask to speak to the chef.

    IMG_2333If you have special dietary needs, Disney can’t be beat!

    We really wanted to eat at Be Our Guest.. I mean really, who doesn’t want to eat at Belle’s Castle?! But the menu options were not great for Lexi and Maddie who can’t have the normal breakfast items!  So we special ordered off the quick service menu and the chef came out and asked us a few questions and then like magic breakfasts for both girls appeared that were egg and milk free!  And it’s not just this one restaurant, it’s all of the Disney restaurants!!

  10. Make sure the other kids don’t get left out in the process.

With so much of what we do and who we are as a family focused on keeping Maddie well, our other girls get lost in the shuffle. Disney is a place for magic for them as we are able to devote special moments and memories for the girls by themselves.

Magic hours have become our special one-on-one times and are truly those magical memories that get us through some of the hard spots throughout the year.

Lexi and I stayed at Magic Kingdom until almost 2am one night!

And Kylie and I snuck away in the afternoon to Epcot one day and then Hollywood Studios one morning. Spending time with one child is so different than with the group!

I truly have so much more to say, but I’m thinking just this is overwhelming. So I’ll leave you with GO! Just Go for it. I know it’s expensive. But we spend SO MUCH MONEY on healthcare that we have to spend some on our emotional health and our family too.

I commented the other day to the girls and Doug that as we move into the next phase of our lives I don’t know that we will go to Disney as often. Lexi and Kylie were very quick to speak up and say that Yes, we will be back soon!

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Yearning

I have so many thoughts swirling in my head.
So many things I want to say.IMG_2104

 

But I can’t… cause I’m struggling to process it really myself.

I’m really not trying to be one of those vague woe is me social media posts people.. You know.. post

But guys, let me just say…

Specialist #25 had no answers for Maddie’s bilateral foot drop. We stumped him. And he was supposed to BE THE ONE. She has no nerve damage and no neurological reason for her feet to have just stopped working. The doctor was nice and concerned, but he had no answers.

Guys, I was scared to death over this appointment. We were assured that we would get some answers today. But Maddie knew. She didn’t have her hopes up.
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And why should she?

Her entire life has been No Answer. No Reason. No Explanation.

So we have been referred to Specialist #26 and hospital #7.

And yes, of course we are thankful that more of the incredibly scary diagnoses have been ruled out. But could we, maybe, someday get an answer?

The yearning doesn’t go away.

The ache is ever present.

The hurt tangible.

Graduation

Graduation has come and gone and with it, Maddie completed her high school journey. There were many times over the last twelve years that I wondered if we would make it to this point.. but we did.

Watching Maddie graduate was wonderful, yet like every other accomplishment in her life, it was not without a struggle. Maddie has been wearing two walking boots for about a month now and these boots, while worn for protection and the ability to walk “normally,” are not easy to navigate ramps and uneven ground in.

But Maddie does just that.

I am so proud of her. It’s hard to not get weepy when I consider her struggles and her accomplishments. Many would use the daily pains and hurts as excuses to not leave the house, but Maddie perseveres and refuses to give up.

Maddie’s educational journey is really just beginning. She wants to be a music therapist, so that means two degrees, an internship, and a board certification. I know that she is going to do incredible things and be a difference maker for children who face physical and/or cognitive struggles.

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So for those of us out there who get frustrated when life doesn’t meet our expectations, I ask you to remember those like Maddie who face daily struggles of chronic pain, chronic illness, rare diseases and complex and often undiagnosed problems.

Since Maddie can get up each day with a smile, a song in her heart and the desire to reach her goals, surely we can join her in that journey!

Yesterday you were a child, Today an adult..

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Photo by Derek Dodson

Maddie turned 18 this week. Of course I knew this was coming.. but I still wasn’t ready. We have been working on college scholarships and planning graduation events, but somewhere along the way I forgot that with graduation and college, my “little” girl was going to become an adult.

Unlike many parents, I’m not worried about Maddie being a responsible adult. Maddie has been responsible pretty much her entire life. And it’s not that I can’t let go.. I will and am..

But here is the deal.

For 18 years I have spent pretty much every breath that I have in me protecting Maddie’s health. I have spent thousands of hours in doctor’s offices, in waiting rooms and researching diseases and cures when the specialists didn’t even know what to do or how to treat her.

And then, starting at 12:01am on Maddie’s birthday, I started getting the emails.

“You have been unlinked to Maddie’s account”

“This email has been removed from the account”

“You have been removed from this account”

over

and

over.

I have been removed and unlinked from Maddie’s life.

There aren’t even words to describe how that feels. Maddie didn’t choose to unlink or remove me. An automated system that just the day before wouldn’t allow Maddie to make a single decision for herself now requires her to make all of the decisions and excludes me from even seeing her account!

It hurt.

But more than that, it scared me.

I wasn’t ready and I hadn’t downloaded all of Maddie’s files. I realize now that I should have been more proactive, but dang.. just living in the trenches is hard enough. Someone should have warned me! That automated system should have sent me an email 30 days prior saying that unless Maddie authorized it, I would be removed from her accounts.

For those of you out there that have never had the struggles that come with having a child with 13 different diagnosis codes and almost a dozen different specialists, I’m sure you think I’m overreacting. Just hang with me a moment…

This week along with Maddie’s birthday, she has had some ongoing and new health issues. She saw her primary doctor who did blood work and is working to get in to see two of her specialists next week. Both specialists will need to see the results of the blood work. None of these three doctors work together or are part of the same network. My job for the last 18 years is to be the manager and provide all of the paperwork and logistics for each of the various doctors. Now it’s Maddie’s responsibility. A responsibility that Maddie will take the lead on, but truly wasn’t ready to take on. As she said, when the doctor’s office calls with results from the blood work, she isn’t even going to know what they are talking about! And Maddie is an educated patient!

I can’t help but be a little terrified.

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Fostering Creative Thinking

Children are innately creative. I know this. I see this everyday.  Yet I regularly hear adults say that their children aren’t creative. I try to be nice. I’ve learned to just keep my mouth shut and not call out these parents, but oh it is difficult! Children NEED to be creative. It is who they are! From invisible friends, bringing soldiers and dolls to life, and even simply playing house, being creative is a necessary part of a child’s growth and development.

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Why do parent’s say that their children aren’t creative? Well, over the years I’ve decided that it is a control issue. Creativity is often messy.  Creativity requires a suspension of disbelief. Creativity embraces differences and pushes boundaries. All of these are areas that make adults uncomfortable. Believe me. I know! Even in my world where creativity is a prized treasure, it is still messy and at times drives me crazy.

But it is worth it.

So what do you do if you can’t fathom the thought of glitter in your carpet, paint on the back porch,  a million legos underfoot or blanket forts in the living room?IMG_5539IMG_7590

 

 

 

 

 

 

 

 

 

Well, start simply.

There are some great games that you can play. While Kylie is the one pictured here, all of my girls are willing and happy to play the games in the pictures together! And that is a win in and of itself! Our family plays games. We play card games, board games and dominoes. We put puzzles together and build lego creations. If the idea of Playdoh crumbs smushed into the kitchen table and chairs gives you the willies.. start with games like Otrio, Trax or Mental Blox.

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(FYI.. this is NOT a paid advertisement.. these are my real life recommendations!)

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Fostering creative thinking is a soapbox issue for me. Why? Because I’m amazed at how many adults DON’T KNOW HOW TO PROBLEM SOLVE! And we as a society are not teaching nor are we modeling to our children how to problem solve, how to come up with new or different solutions to problems or even how to think for ourselves!

While I am a huge advocate for technology and I want equal access to information and all that technology brings, I am worried about the immediate reaction to just “google it” when something doesn’t work.

Resiliency is more than being able to survive when the internet is down!

We have to model and teach children that when there isn’t a clear answer, sometimes we have to simulate the what-ifs and work through options. We have to not only allow FAILURE, but embrace it and show our children how to move through failure to success!

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So there you have it. I challenge you to go be creative today. And no, you don’t have to go paint a picture or create a sculpture to be creative. Go play a game, create a fairy garden in the flower bed, build a treehouse.. do something that doesn’t already have a set finish point and that requires your brain and your body to work together in a new way!

And finally, enjoy the journey

Primary Immunodeficiency

Saturday afternoon as I sorted the mail, I wasn’t expecting a sucker punch. But I got one. There in a seemingly innocent receipt from one of our specialists was a new diagnosis for my daughter. No explanation. No preparation. Nothing. It was just listed there between Unspecified asthma and Other allergic rhinitis like a harmless friend.

But its not.  In fact, nine vials of blood were sent to the Medical College of Wisconsin (the only center in the country to run the incredibly specialized tests that she had to have) last spring to see if maybe we might have some answers. And we were told no. That the tests were inconclusive and that we should just stay our course and not change treatment.

And then bam. There in black and white and insurance codes was D83.0…  that’s Common Variable immunodeficiency with predominant abnormalities of B-cell numbers and function .. for those untrained in insurance codes.

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Guys, that’s a primary immunodeficiency and we are smack dab in the middle of a horrible flu season and my child is getting no preventative or precautionary medical treatment.

I am RUNNING SCARED!

You would think by now I’d be use to this kind of crap.

I’ve been a parent of a sick child with rare diseases for eighteen years.

But I’m still scared.

Tonight as we face the week ahead, all I can do is pray for my sweet resilient daughter and pray for her protection. Her incredibly complex medical picture makes easy answers and typical protocols not work for her.

So please you guys out there.. if you are feeling achy, tired and run down, do me a favor and stay far, far away from my girl. I desperately want to keep her home the next couple of weeks, but that isn’t possible. We joked tonight, as we have many, many times over the years about needing to get her a bubble.

Tonight my laugh was brittle.

Transitional Parenting

Transitional Parenting.

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Maddie and Me. Photo by Amanda Akins Photos

That’s the kind of parenting that I am doing right now with my daughter who is a high school senior. Actually, I’m struggling to be a transitional parent as I am so used to being a hands on all the time mom… and still am to my 12 year old and 8 year old… but my high school senior is very ready for me to let go, and let her go.

But oh this is hard.

I’ve heard all of the stories for years. I didn’t doubt them.

But it is different when it is YOUR CHILD!

For the last almost 18 years, my entire world has been wrapped up in keeping Maddie well. Every decision, every plan, every possibility has been weighed against the potential medical response that Maddie might need. I can’t explain it really. Maddie’s medical needs have been an ever present issue. And now, it is terrifying to let go and help her walk away and prepare for college.

And she is doing it.

Maddie applied for college the first weekend applications opened. She was accepted almost immediately.

Maddie has been to a scholar’s preview and has accepted her first scholarship.

Maddie is taking ownership of her scholarship essays and telling me to butt out.

Maddie is ready to take on the world.

Her momma might need some counseling.

It really is amazing how wonderfully Maddie is doing right now. She is the healthiest that she has ever been. She is confident and strong.

These were the days that we prayed for when she was little and things were so scary.

So we are in a time of transition.

May God have grace on parents of high school seniors!

 

 

Open letter to Pediatric Specialists

This week we took my daughter Maddie to a new specialists. This was her 22nd Specialist. Twenty-two times we have sat in a specialist waiting room and have answered countless questions. 22 times. This number doesn’t even include dental/oral specialists, physical therapists, and all the other extra doctors/practitioners we have seen over the years.

We left frustrated.

We left a little more resigned.

We left a little more heartbroken.

So here are my thoughts, not that any specialist will ever see them.. but it makes me feel better to get them on paper. I realize that there are many specialists out there doing a fantastic job and making a huge difference in the lives of children (Dr Wasserman is our hero!) But for every incredible doctor we have seen, we have a handful that have left scars.

Those scars hurt.

And when your whole life is about finding help for your child, having a specialist add to the wound is wrong. I truly don’t believe they realize what they are doing… so here are my wishes and recommendations:

  1. My child has a name.
    Please make an effort to talk TO my child, not at my child. Even better, call her by name! The best way to make a connection is to find a few moments to get to know the patient. I realize that you don’t need a connection, but WE DO!
  2. Read the medical chart before entering the room.
    If we are seeing you, the likelihood is that there is a reason! Please don’t ask us simple questions about diagnosis and referrals, we need to see that you have read the chart and have made an effort. And really, when I have to explain what the primary diagnosis means or how to spell it, how can you expect me to trust anything else that you have to say?
  3. Honor the work that we have made to get here.
    You may not agree with what other doctors have done or said in the past. In fact, you may not see any reason for us being in your office, but please honor the work it has taken to be sitting in your exam room.
  4. Listen
    When you ask a question, listen to the answer. Don’t assume that you already have the answer. We can tell and the best way to get a child to stop answering your questions is to show her that you don’t really care what she has to say.
  5. Don’t discount our experiences
    My child has been sick for 17 years. I have sat in countless doctors offices and have experienced more than you could ever imagine. My daughter is in the 1% club for side effects, allergies, and illnesses. I’ve lived through the fine print! Please, don’t discount our experiences. Just because we don’t describe it exactly how you read it in the textbook doesn’t make it any less valid.
  6. My child is more than a test result and quality of life matters
    I realize that your care is driven by and dependent upon test results, but those things don’t mean much to me. I care about my child and the fact that she is hurting. When tests results mean another dead-end, can you please offer more than “well, at least we have another no..”
  7. Do a thorough examination
    My daughter told you that she had seen 21 other specialists for a reason… She didn’t like your vibe. You then proved it by doing a minimal examination. bummer. You proved you didn’t care right then.
  8. Acknowledge that you don’t have the answers
    After 17 years of consultations and testing, I don’t expect you to have the answers. I pray daily that you do, but I don’t expect you to do so. So instead of brushing off symptoms and clinical observations, acknowledge that you don’t know what to do! We will honor that and invite you to join the journey.
  9. Imagine life in our shoes.
    I’m guessing that living life as a speciality doctor gives you the understanding that you are the smartest person in the room most days. Well, being the smartest person in the room may or may not be the case, but you could at least be empathic! I don’t imagine you have ever considered what it would mean to you and your mindset if you had to go through life knowing that no matter what you did, where you looked, or who you talked to, you couldn’t make things better/heal/fix your child!
  10. Please leave me with hope
    At the end of a consultation leave us with hope. Please. Instead, after sitting through an almost 2 hour visit you said there was no reason for a follow up unless the blood work came back “icky.” Really? How hard would it have been to leave us with the “I’ll be in touch” or something tinged with hope?! But to make a decision that we aren’t worth your time before even seeing test results? really? nice.

So what do we do? We continue to fight. We continue to research on our own. We continue… It seemed awfully easy for you to look at us and say that the current medical research doesn’t have a unifying diagnosis for my daughter. But it’s not easy for us.

and so we will continue the fight, we will continue to search, we will continue to hope.

Cause Maddie matters.

The quest continues with Specialist #22

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Today we are meeting specialist #22.

Yes, today will be the 22nd time we have sat down with doctors who have chosen to specialize in a branch of medicine and have hoped for answers for Maddie.

I’m hopeful. I have to be.

But I’m not “getting my hopes up.”

Over the last 17 years we have learned resignation. Dang.

But we have never given up. We have never quit. We have never stopped searching for answers.

So today, we go meet another doctor. We tell Maddie’s story again.

Maybe, oh please, maybe today we will meet a doctor willing to captain Maddie’s uncertain and uncharted medical ship.

We have to hope.

Sandwich Parenting

Sandwich Parenting… parenting your own children and parenting your parents. It isn’t easy. Maybe that’s why it’s called that, cause being caught inside both ends of the spectrum means that you end up smooshed like a piece of expired bologna.

Today was one of those days.

 

I don’t put this out there to get a woe is me. I am not a martyr. But I am very much the mom of three kids that need me and the daughter-in-law turned parent figure of a very vocal and needy mother-in-law. My husband takes the brunt of his mother’s ire, but man, oh man, parenting a parent while parenting your own children is difficult.

Below is a snapshot of two REAL CONVERSATIONS this morning…

with the 7 year old

Daughter: Can we go to the storage building?
Dad: Why?
Daughter: To get a dollhouse couch.
Dad: Not today. We are all sick and getting in the storage building would be bad for our allergies.
Daughter: (Tears) Why can’t I ever get what I want? Why don’t you understand me?…

 with the 77 year old

Mom: Can we go to the storage building?
Son: Why?
Mom: I want to look for some perfume.
Son: Not today. We are all sick and getting in the storage building would be bad for our allergies.
Mom: (Tears) Why can’t I ever get what I want? Why don’t you understand me?…

It’s the daily conversations like these that wear on your soul. You expect to have fights with your kids. That’s part of parenting. But having duplicate fights with a grown woman are hard to take on a daily basis.

What is truly frustrating to me is that I watched my father-in-law have these same conversations with his mother and Doug’s mom wasn’t happy with incredible stress that was placed on her husband because of it. By the time I joined the family Doug was a grown man and his parent’s were retired while caring for Doug’s dad’s parents.  But here I am watching the same situation, next generation, but our children are small enough to still need lots of parenting. I am trying my absolute best to not be bitter. Some days are harder than others.

So for those of you out there living in the land of sandwich parenting, let me say, you are not alone. It is tough and it feels like no matter the decision you make for your parent it isn’t the right one, but hold on and enjoy the very rare and brief moments when all the ingredients in the sandwich create a masterpiece.